Parents and children with special needs protest at Stormont about lack of education and placements after age 19
Mothers of children with severe special pressed MLAs at Stormont yesterday to end the situation which sees all education and placements for their children cease when they turn 19.
One mother from Londonderry told the News Letter that she only gets two hours sleep a night because of the demands of caring for her 19-year-old son.
Dozens of mothers and their children took placards to the steps of Stormont to press for a new law which would give their children the same legal rights to placements or education after 18 which already exist in England.
By law all children with special needs must be provided with education or placement opportunities after they turn 19 - unlike Northern Ireland.
Suzie Ward said that it was only when her son Eoin was in school that she could get normal household and life related tasks done - but now that because he has now turned 19 she must care for him 24/7.
"Eoin just finished school in June and we don't have any placement for him. We have no daycare, no services," she told the News Letter.
“He requires 24 hour care. So a typical day is the one just demanding my attention all day and me not being able to get two minutes to myself. He does have challenging behavior, and it can be aggressive, so it's exhausting."
He only sleeps two hours per night and often tries to climb out windows.
When he was at school she got "some respite" and time to clean the house and care for her other son, who also has autism.
"But now he is bored and frustrated. He has regressed and has become very challenging."
"He just deserves a fulfilling day like every other young person, rather than being stuck at home with me. “
She has been applying for post-19 placements for him since he was 15.
"I never imagined we would still be in this position four years later."
The campaign for Caleb's Law is led by Lisburn mum Alma White, whose 17-year-old son Caleb has autism, ADHD and has been flagged for selective mutism.
Although he is still in full time education she is aware of serious problems for him on the horizon when he turns 19.
"A lot of our young people who attend special school have very complex needs, and they're completely being left behind with no opportunities, no employment and no care, no residentials and no respite once they turn 19,” she said.
She says there is no data collected on how many young people in Northern Ireland are in this position.
"This was the first day back for MLAs and we just wanted to let them know that we are not going away and that we're going to keep coming back until they do something."
Education Minister Paul Givan said he recognised the "real challenges" within the sector.
But he added that he has plans to establish a "flagship" capital programme for the SEN school estate.
"All of this has now been mapped out," he told the BBC.
"I will need other parties to support me. I met the finance minister just last week, I outlined to him the ask we're going to require. It's £1.7bn over the next 10 years."